Scorn not

It’s been a busy week or so, and I am still pulling together a review of The Speed of Dark, but I jotted a note to myself to blog this last weekend following the Republican National Convention and all the furor surrounding Alaska Governor Sarah Palin and her newborn son with Down’s Syndrome.

Over the weekend, and with the news about Gov. Palin still fresh and in rotation, my iPod mix shuffled itself to Sinead O’Connor’s version of Phil Coulter’s “Scorn Not His Simplicity”, written about his young son with Down’s Syndrome.

= = == === =====
See the child
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how he feels
Or have we really tried

See him now
As he stands alone
And watches children play a children’s game
Simple child
He looks almost like the others
Yet they know he’s not the same

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no

See him stare
Not recognizing the kind face
That only yesterday he loved
The loving face
Of a mother who can’t understand what she’s been guilty of

How she cried, tears of happiness
the day the doctor told her it’s a boy
Now she cries tears of helplessness
and thinks of all the things he can’t enjoy

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no

Only he knows how to face the future hopefully
Surrounded by despair
He won’t ask for your pity or your sympathy
But surely you should care

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no
Oh no
===== === == = =

I first heard the song many years ago when O’Connor first released it, and if you are a parent of an autistic child hearing it for the first time you can imagine my reaction. I’d love to hear yours.

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If you’re asking what my take on it is now, I’d say that it is – for autistic kids, at least – a mistaken impression that there is nothing going on behind those eyes. It’s just that the eyes don’t show what is going on, unless you know what to look for.

If you’re asking me what I thought when I first heard the song back in 1994, not long after my son was diagnosed as autistic, I’d have to tell you that the line you mention grabbed onto my mind and wouldn’t let go so I had to listen to the whole thing. By the time it was over, I was thinking, “Wow, this song captures what I’m feeling almost exactly.”

Of course, as time went by I came to better understand what is actually happening behind the words in the song (my son is anything but “simple”), but the song still makes me stop and think whenever it comes into rotation on my iPod. (Sinead O’Connor is a favorite, so this is pretty much always on the iPod somehow.)

As many — from Jim Sinclair of ANI to Lisa Lieberman of AutCom — have pointed out, grieving is sometimes a necessary stage. You can work through it, and get beyond it, but to *really* get beyond it, you have to accept that it will sometimes hide in the bushes and ambush you pointlessly even though it knows it has long since lost the larger war.
It’s not wrong to grieve. It’s what you do beyond the grief that matters. And that, despite the title, is the message of “Don’t Mourn For Us”, the tortuous road to public presentation of which I think was a turning point in our community’s history — our Stonewall, if you will.
Amazing. It’s been 16 years now since the ASA leadership of that time suppressed its first scheduled presentation, and 15 years since it was successfully presented at the Geneva Centre’s conference in Toronto.

I agree with what you wrote and only wish I were as talented to express it the way you did. I also think this should be discussed more on the “Hub” because I see a lot of it. I see a struggle of wanting to accept ND, but the grief sort of kicks some in the “butt” every once in a while. Autistics also have a role as I see it to acknowledge that we aren’t exactly what was expected, that at times we can disappoint, not unlike other children or friends. We are unlike others in many ways, but we are MORE in other ways as well.

Sometimes, parents grieve and that should not be scorned but recognized for what it is. Only through grief can a new life begin, a new hope, and a partner in change will result I think. It is ok to grieve if one needs to, much better to be open about it than to attempt to hide it because inevitably, it comes out in the little things said and done, which to some of us are all too obvious when we see it. One should not feel ashamed for grieving for a child that is not like you.

Its where you come out of from that grief that matters. Not where you start but where you end.